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Tuesday, 2 June 2015

Making Adjustments to Cope with Disabilities - Compromise and False Vanity

I looked back at my calendar a few days ago and realised that I have been more unwell than usual since the end of March. The last time I can say I was well was when we visited my daughter and her partner in Leicester for a weekend and I managed a pub crawl and a bit of shopping and everything seemed OK. But by the end of the following week I was seriously doubting that I could make a friend's wedding.

What happened? Well, I suppose the pub crawl might have been a bit much ... we travelled into Leicester city centre in the car, my daughter drove (she is soooo grown up now! A car and a job!) as she was happy to defer her drinking until later in the day. In the first pub we found a Leicester CAMRA Ale Trail map on which the OH and I planned the rest of the afternoon's crawl. In all the OH and GB, my daughter's fiancé visited about eight pubs, my daughter and I opted out of the middle section of the crawl to pop into WH Smith and Argos and a few other places. We were in town for about five or six hours, but that did include lunch and and a later snack in Wetherspoons. I don't think I walked very far as the pubs I missed out were the furthest flung ones, I usually had the OH or my daughter to lean on and I didn't drink more than a couple of pints as I had soft drinks in several pubs - all part of the modern compromise for me.I don't remember being tired the following day, but I did fall asleep in the car as the OH was driving back to Barnsley, which is normal for me.The during following week I had some upsetting news which probably affected me more than other people involved as I seem to take everything to heart much more these days. I think the isolation of working from home doesn't help, as apart from having a moan via Facebook and on this blog it is difficult to share my problems.

Dancing - Black and White!

Then on the Saturday was my old friend BH's wedding. I spent the morning in bed resting up as I really didn't want to miss this special event, another part of my planning to cope with expected exertions. The photo above, from Facebook, shows the effect a couple of glasses of white wine had on me. I am not the one in white! Needless to say I was absolutely exhausted the following day. I had a wonderful time, saw some old friends and wish BH and his bride all the best for the future. x

Usually it only takes a couple of days to recover from a bout of exercise like this, but looking at the calendar again I can see that the following weekend we visited my mum and I can remember being too tired to do anything. We usually manage a bit of gardening or heavy cleaning for my mum, but that weekend I think the best I managed was some online faffing to do with my mum's bills and banking.

Logo from 2015 CAMRA members' weekend

The next great adventure was the CAMRA (Campaign for Real Ale) Members' Weekend and AGM in Nottingham. As a friend of ours was standing for the National Executive we had even more reasons to attend than usual. The OH and I used to attend the whole weekend, booking a hotel from the Friday afternoon through to Sunday, but in recent years we have either not attended or have just gone for one day. When the Members' Weekend was held in Sheffield in 2011 the OH and I were on the organising committee along with members of the Sheffield and Rotherham branches, so you can see we are very dedicated CAMRA members, not just to the drinking of real ale but to the aims of the campaign too. I have been a CAMRA member for over 20 years and the OH even longer. However as part of my compromise with my disabilities I had to step down from my role at the Great British Beer Festival (GBBF) two years ago and I haven't managed to help out at a Barnsley Beer Festival for longer than an hour or so for the past few years. That day out in Nottingham was very long, the AGM part of the weekend starts at 9.30am on the Saturday so we had to get an early train from Barnsley. We didn't stay late in Nottingham afterwards, leaving not long after the business finished, but even so it took hours to get home as a change of train in Sheffield was required that we hadn't needed to do on the way out. Of course I stayed in bed the next day, but I can't have been too poorly as I still managed to make the Cudworth History Group and the Archives the following week.

Then there was the GBBF Bar Managers' Meeting in the Hock Cellar at Fuller's Brewery in Chiswick, London. It turned out to be the weekend of the London Marathon so getting a cheap hotel room in the area was impossible. The OH and I ended up staying in Borehamwood for two nights, where the Travelodge plus parking and two all zones day tickets for London trains and buses on the Saturday still cost less than the cheapest room we could find in the city centre. I had volunteered to take the minutes at this meeting, which used to be one of the jobs I did regularly as part of my GBBF commitment, as the regular minute taker was on holiday and as the OH had to be there anyway it meant I could travel with him. Having the hotel meant that we could take our time over the journey and we didn't have to travel to and from London on one day, something I used to be able to do. Fortunately as the minute taker I am allowed to claim travelling expenses which did cover one night's stay, the other night the OH and I added on ourselves to make the journey even easier for me. Another compromise. The meeting was great, lots of old friends whom I hadn't seen for a long time. I didn't have ANY beer as I was taking the minutes and I missed the buffet as I had to visit the ladies and by the time I got back the gannets had had the lot! Fortunately the OH and I had planned for this and had the makings of some emergency sandwiches at hand. I was quite upset at the time as the meeting had gone on for four hours and I was really, really tired. I knew I would be unable to promise to do that job ever again. Afterwards we walked along the river bank back to Hammersmith via a couple of pubs. I wasn't even the slowest walker that afternoon as one of the other chaps in attendance was just recovering from a badly broken leg so he was keeping a nice steady pace, just right for me leaning on the OH or my friends. Another friend even carried my laptop bag for me. I will say this for my CAMRA friends, they do their best to look after me! I wish I could do more, but I can't. Sorry.

A generic image of a South Yorkshire Concessionary Travel Pass

That trip must have been almost the final straw as I can see from my calendar that I didn't manage to make the Archives the following week, April 30th, and I haven't been since. However that was the same week the whole thing about my bus pass blew up, as I blogged on here previously. I know that upset me dreadfully and it carried on for weeks. I did eventually get a letter of support from my hospital consultant (my GP surgery had refused point blank to write one) and a proper printed letter from the Council saying that I am fully entitled to a pass, but as yet I haven't had the energy to get back to the bus station to hand these in to try to get a full pass in exchange for the short term one I was grudgingly granted by the man on the desk there.

The side of the Trinity Church showing the stone course between the windows

We have been back from Wales for just over two weeks. I haven't managed to visit the Archives or the Cudworth History Group, although I was able give a talk I was booked for at the Holy Trinity United Reformed Church on Farrar Street in Barnsley last Wednesday thanks to the chair of the group cleverly arranging a lift for me from door to door by a lady who lives near to me. Well done and thank you so much for that, I would have hated to have let you down. That had the exciting side benefit of me spotting a new war memorial on the stone course on the side of the church hall as my lift pulled away after the meeting. My problems for the past two weeks have been mainly tiredness, with abdominal pain caused by my Crohn's disease on several memorable days along with the usual frequent trips to the smallest room. This means that I have been eating mainly 'white' food, bread, crackers, pasta, soup, chicken breast and low fat cream cheese. I have also been suffering increasing joint pain, depending on what I have done the day before. So a day spent planting out some tomatoes and weeding a patch of garden, sitting down and shuffling along as I worked along the bed, resulted in painful shoulders and knees. A couple of hours of walking around Barnsley leaning on the OH after a visit to our solicitors resulted in aching and swollen ankles and knees. The same thing happened during our trip to Wales after our day out in Caernarfon. I can only imagine this is a side effect of the poor nutrition and general inactivity due to the tiredness.

Unfortunately even a trip to the Co-op about 150 yards from our house is now very difficult. When the helpful lady from AgeUK came last week to assist me in filling out my PIP (Personal Independence Payment) claim form we worked out that on a bad day I can only get around the house leaning on things. On a medium day I can get to the newsagent or library where the Cudworth History Meeting is held if I lean or sit on walls along the way, and on a good day I can get to the Co-op, again with leaning and resting several times. For any longer walking activity, such as a walk around town or trip to ASDA, I need the OH to lean on or a supermarket shopping trolley. The result of any kind of prolonged walking activity is one or more days in bed afterwards recovering.This realisation has led to me ordering a domestic shopping trolley, see photo on the left. I did manage to find one on ebay that was nearly new, saving quite a lot of money. I will be able to lean on this when I go to the Co-op in future. Friends on Facebook responded to my rather negative post, in which I suggested that I now knew I was beyond saving as I had had to resort to a trolley, by sensibly noting that I was being ecologically friendly by saving petrol by walking to the shop (not that I dare drive alone these days, too easily distracted I'm afraid), and that it was false vanity to worry about pushing a trolley. They are so sensible ... I do really like the support I get from everyone on Facebook. Thank you. x

Other typical adjustments that I have made include leaving the dishes to soak in warm sudsy water for half an hour before washing up so I only have to stand at the sink for 10 minutes. Preparing vegetables for tea in short bursts, chopping an onion and pepper at lunch time, then peeling the carrots later. This means I have everything ready for just putting in the pan at the right moment, in the best tv chef style! Or on a medium day doing a baked thing, it was baked squash last week and I've done baked potatoes a few times recently. When all else fails we have a chest freezer with ready meals, usually picked up when they are half price or reduced or from the local Fulton's discount freezer store. I really enjoy cooking, but it's that false vanity thing again, sometimes I have to accept that I will be offering the OH a frozen Quorn cottage pie instead of a pan full of veg or a nice homemade lasagne.

Today's worry is that my wrists hurt so much I am having trouble typing. This suggests a problem with the height of my overbed laptop table and the position of my laptop in relation to me ... I raised the height of my table when we got a new mattress a couple of weeks ago, but now I think I have 'settled' in and the table is too high. I will do some adjustments and see if things improve.

Gone are the days when a post like this took just an hour to put together, I think I have been at this one for about four hours and am only just reaching the end, another compromise, doing work like this in chunks so I don't get too tired and lots of proof reading to avoid silly careless mistakes. Ah, well, thanks for reading. Comments and suggestions about other ways to cope with this tiredness welcome.

4 comments:

I have just finished reading your latest blog and it sticks out a mile that you are doing far too much. It is very difficult, learning that you have a chronic condition and coming to terms with it. I was the same when I injured my spine, my mobility is practically none existent, I used to fret and worry over this, gradually I came to terms with it. Then, twenty years ago porphyria jumped in on the act, I was pole axed (especially when my mum told me that there was nothing wrong with me) We used to have a caravan overlooking the sea at Whitby, we loved it, however we had to sell it because of my being allergic to daylight and sunlight. I know that I am old enough to be your mother, so I can say to you, that you do so much good work with the BWMP plus so many other things, the news letter is an example. Please be kind to yourself, I don't think you realise how much people appreciate your efforts, I know that I do. The Americans have a saying "if life hands you lemons, make lemonade" I reckon you must have bottles of it stashed away. Thank you for all you have taught me, it hasn't been easy for you but you have always been there to help despite how rotten you were feeling. Sorry for the lecture, take care of yourself. Mary

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About Me

I'm a mature perpetual student. I studied with the Open University from 1998 to 2014, history mostly. I used to enjoy volunteering at the local Archives transcribing old documents and helping other people with their Family History queries. I like to think I'm pretty good at IT for someone of my age group, so I can often assist there as well. I've been researching Family History for over twenty-five years, and I've been a Campaign for Real Ale member longer than that. I was diagnosed with Crohn's Disease just over nine years ago and had to finish work seven years ago. I reinvented myself as a Local History speaker, specialising in WW1 Soldiers and War Memorials, but had to give that up due to ill health this year. I am an Official Remote Volunteer for the IWM's Lives of the First World War and War Memorials Register projects. In October 2017 I began an MA in the History of Britain and the First World War at Wolverhampton University.